Advisor, Board Member, Professor, Former Tech Exec, …

Guillain–Barré syndrome

I am now perfectly healthy, and I’m on a mission to raise money for the GBS/CIDP Foundation. I’m going to do what GBS stopped me doing for a while: running! I’m going to run 52 races this year. Please join me in helping others who suffer from these terrible conditions by doing four things:

The Short Story

One day in the middle of 2009, I woke up to a tingling sensation in my toes, almost like a cramp that made them feel like they were curling. I was a little dizzy.

Over a couple of days, more strange sensations began in my legs and eventually my arms. My heels went numb, then my toes, and then my calves started tingling and went mostly numb too. I felt strange buzzing sensations in my legs. Walking was awkward. My face started feeling a little numb, and talking felt strange. I suddenly felt exhausted just walking to the mailbox. I was freaked out. Very freaked out.

Late in 2009, a few months after I was diagnosed with GBS. I’m out of shape, but on my way to recovery

My general practitioner didn’t know what was happening, and sent me to a neurologist.

The neurologist tried some reflex tests. A hammer-hit on the knee did nothing. I normally had good reflexes. I had a few other tests, including getting to know the inside of an MRI machine pretty well. Somewhere around this time, doctors started muttering possible diagnoses such as Multiple Sclerosis. I wouldn’t wish that undiagnosed limbo on anyone.

The next step was a visit to the UCSF Medical Center, where I was finally but quickly diagnosed with Guillain-Barre Syndrome (GBS). While I wasn’t happy to be sick, I was very happy to know what the problem actually was, and to learn more about the condition. I’ll come back to that in a moment.

It was a tough time. My family was in Seattle, and I was in California. I’d just started a new job at eBay. Luckily, eBay was very understanding, and I was able to quietly work part-time for a while. My days went like this: wake up at 8am, feeling exhausted; struggle to make breakfast; slowly get ready (lots of sitting and resting); drive to work; pretend you’re ok for a few hours (while sitting, resting, and feeling strange sensations); go home; struggle to make a meal; sleep for 13 to 15 hours; begin the next day.

What is GBS?

GBS is rare and unusual. It occurs in one to two people per 100,000.

It’s thought that after you’ve had an infection (in my case, probably a viral ear infection), your immune system loses the plot and attacks your nervous system. GBS is otherwise known as Acute Inflammatory Demyelinating Polyneuropathy (AIDP) which gives you clues as to what it does. Acute means it’s not as serious as it could be; chronic is worse. Demyelinating means your immune system strips your peripheral nerves of their myelin, leading to strange sensations and loss of function. Polyneuropathy means it affects many nerves at once. It perhaps should be called Peripheral AIDP since it doesn’t affect your central nervous system (brain and spine): it starts at your feet and works its way up, often taking out your arms.

Serious cases leave people on a respirator and can involve months in hospital. My case wasn’t serious. There’s no cure for GBS – you just wait it out. Doctors often prescribe strong steroids, but there’s no evidence I can find that they help. Blood transfusions can ease the symptoms. Luckily, most people are back to normal within a year or two. Not everyone is that lucky though.

People who’ve suffered from GBS have the same chance of getting it again as those who’ve never had it.

Getting Better

Over the next year, I put on 25+ pounds and became horribly out of shape. There’s no way I could exercise, and I wasn’t in the mood to eat right. I often woke in the night because of numb hands and tingling legs. I was phenomenally tired and easily exhausted. My balance was off, and I became dizzy easily. But I steadily got better – and by mid 2010 was thinking about getting gently back into exercise. Fast forward to today and I’m completely fine.

A recent race. I’m back running, and ready to run 52 races in 2015 to fight GBS

I think differently post-GBS. I know that health is the most important thing in the world: without it, you can’t look after your family, let alone work. I spend more time looking after myself, and balancing work and life more effectively. I also think more about people less fortunate than me: having GBS was tough, but my case was mild and there are far worse things that happen to people.

Helping People with GBS

I am turning the tables on GBS, and fundraising for the GBS/CIDP Foundation. I am going to run fifty-two races in 2015, and blog about it over at fiftytwofives.com. The name is inspired from running fifty-two races of 5k in distance — but I will count anything that has a timer as one race (one-milers, 5ks, 10ks, ten-milers, half-marathons. Heck, maybe even a marathon). If you’d like to be part of my fundraising, just head over here to IndieGoGo.

The GBS/CIDP Foundation is doing great work. The foundation helps with education for those suffering GBS and its chronic, recurring cousin CIDP and related conditions. They fund research to understand more about this condition. They lobby to ensure people get access to the health care they need (I’m lucky because I can afford access to great healthcare; of course, not everyone can).

A Quirky Afterword

Next time you have a flu vaccination, take note of the questions you’re asked. Down the bottom, you’ll find “Have you ever suffered from GBS?”. If you answer yes, your doctor probably won’t give you the flu vax – in 1976, after the flu vax was issued, there was roughly twice the incidence of GBS in people who’d had the vax compared to the population that hadn’t. It’s not understood why that happened. And even though they think GBS doesn’t recur, they generally won’t give the flu vax to folks who’ve had GBS.

I didn’t get the flu vax for that reason from 2009 to 2013. However, after I got the flu in 2013, I talked my doctor into giving me the flu vax in 2014. I just got this year’s too. Nothing interesting happened. I’m happy about that.

Hi, I came across your site while searching GBS fundraising so I can start a fundraiser for my 15 year old cousin who has recently been diagnosed (2 1/2 weeks ago). She is a dancer and a great one at that so this is literally her worst nightmare as a young girl. She was brought to the emergency room and immediately intubated. 6 days later they were able to take her off and she has been breathing on her own since then. She has a different type of GBS where it started with her arms and went down to her legs and it was aggressive!! It’s completely heartbreaking to see the pain she is in… She just entered a children’s rehabilitation center a few days ago and the physical therapy is helping but she can’t sleep because the pain is unbearable. She still can’t get to the commode and has to be lifted to get into the wheelchair, all the while trembling from the pain. Even getting the bedpan under her is torture for her. As you can imagine she is also extremely depressed and cries most of her days. The reason I am sharing this is because even though she’s in the rehabilitation I can’t help but wonder is there more that can be done? Are they treating her condition properly? And I was hoping you may be able to help with my understanding of this as you seem to have very well educated yourself on GBS. If you can get in touch with me it would be much appreciated, if not I still want to thank you for all you are doing for this terrible illness.
Prayers your way,
Lisa

I’m glad you got better fast. GBS might have been caused by the flu shot you had. It is one side effect of flu shots. Best wishes for lots of good health! Thanks for your post about writing goals- I just followed your guidelines and made a really good list of goals!